update

[JamesB]

Not sure where I should post this. Since it's an update here goes. I have done 3 and a half rounds of the Triplet. Got really good news a couple of weeks ago. The CT scan showed shrinkage of 65%. Oncologist is very happy. They are going to continue with just the Immunotherapy every 3 weeks and are going to let me rest for a couple of weeks before they start.

 

Bad news is I still feel like crap. While on the triplet I wound up being hospitalized fr 10 days-turns out I got a bad infection in my gall bladder and and inflamation in the rest of my body. Was on antibiotics and had no appetite and diarahea and all the other fun things that go with that. No visitors very isolated no fun,

 

I'm at home but have no strength. Get out of breath very easily and am sleeping a lot. Appetite still sucks. I want this to be over.They also want to put a port in as my veins look like a junkies.

 

I think the immuno is Pembrolizumab. I think the trade name is Keytruda .I was feeling good when I got the news but feeling like crap has taken some of the happiness away.

[GaryG]

Hi James: First of all it's good that you post and let your frustration out. No better place and no better audience for it. As triplet patients  we all go through the side effects, each more or less the same. We suffer through days of misery and enjoy few days of relief and the cycle starts over again.  However for some of us that cycle ends when a big green sign shows N.E.D. Personally I will put up and fight any side effects providing I can reach that goal. For instance I no longer consider sleeping a side effect because I don't hurt when I sleep. As for not eating, the doctor can prescribe medication to help you regain your appetite. Once your appetite is restored you will gain strength and be able to resume most of the daily activities.   Putting a port in will make life a lot easier in the long run and after a while you even forget it exists. After you do those things your infusion will become a lot easier to tolerate. The end game is to beat cancer and be a survivor so suffering  a bit in order to reach that goal is well worth it.  I wish you the best.

[LexieCat]

Hi, James, 

Happy for your good scan, sorry you're still feeling crappy. You may feel a LOT better on the Keytruda alone. I've been on Keytruda in conjunction with Carboplatin and Alimta all this time, but when they switch me to maintenance, I will not only be on Keytruda, but still on the Alimta as well. 

Some people have problems with side effects from Keytruda; others don't. Since I'm still getting a combo of all three, it's hard for me to know which meds are responsible for the fatigue and other (thankfully mild) side effects I experience. I'm hoping most of the unpleasantness is attributable to the Carboplatin, but won't know till they do the switch. 

Hang in there--let's hope things get better on the Keytruda.

[Lisa Haines]

It's wonderful news that your CT scan is showing great results.

 

As a Stage IV patient who was on both chemo and then immunotherapy I can tell you  that it may take several weeks before you get to feeling somewhat "normal" again.   To be totally honest I have never gone back to feeling as well as I did pre-cancer.

Nonetheless I'm very thankful and grateful vto be stable and doing well and I'll take this any day over progression etc.  As long as my treatment continues to work and the side effects are tolerable, I am ok.  It's definitely far better than the alternative.

Best wishes!  

[JamesB]

Thank you all so much for your support and responses. So nice to have people who have been there I have to keep my eye on the prize it just gets overwhelming on some days. I do hope the side effects on the Keytruda are minimal that would be so nice,but I'm happy that I've gotten such good results. Thanks for all the tips and hope. You people are a godsend.

 

[TJM]

James,

My two cents.....the side effects of Chemo can last quite awhile. Same with radiation.  I was making great progress thru August and then went backwards. My normal screening CAT was done in November (and unfortunately found more cancer). 

Make sure that you communicate with your Drs. They did a lot of tests for non cancer issues because nobody expected a bad FIRST scan. So blissfully ignored the obvious. Hopefully you will gradually feel better. The first sign I was getting better was when the fatigue went away.

Second....save your veins and get a port.  Only pain is having to have it flushed every month or so when not being treated.

Wishing you the best

Peace

Tom

[LexieCat]

Oh, yeah, I forgot to mention the port. GET ONE. I'm grateful to my surgeon who put it in every time I go in for blood work or infusions and I don't have to get stuck a gazillion times. It is so, SO worth it. I used to dread even routine blood draws or injection of contrast for CTs because it was always a crapshoot whether they'd get lucky and find a vein on the first try. And every time they decided to check the other arm or hand or something my blood pressure would go up. Now I'm calm and relaxed every time because I KNOW it's not gonna be a painful ordeal.

 

[Lisa Haines]

  Oh YES!   A Port is awesome and I would never not have one and have no plans to remove mine even though I'm off treatment.   We still use it for all my lab draws and for the IV contrast for scans.  I also recently had hip surgery and because I had a port, anesthesia also used it during surgery and they used it in the hospital for any IV fluids and labs I needed!  It's a blessing and I've had mine for going on six years without any problems.  I do have it flushed every 6-8 weeks, but that's easy!   I LOVE my port and it's saved me from 100's of needle sticks at this point!